Welcome to the
With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD.
Connect with us to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.
Phoenix Community Meeting
In honor of Donate Life month, the Phoenix Chapter will be facilitating a virtual panel discussion with experienced transplant recipients and living kidney donors. Panelists will answer specific questions as they share their personal journeys to transplant and donation. Panelists are Kati Norris and Julie Hoggan.
Saturday, April 22, 2023
9 am – 10:30 am
Video conference link will be emailed upon registration.
Are you interested in helping us grow the Phoenix Community?
We are looking for volunteers to help us offer more opportunities in your local area. If you are interested in this opportunity to volunteer and further our shared vision to #endPKD, please complete our volunteer form and let us know how you would like to get involved.
If you have questions, please email us at firstname.lastname@example.org.
Registration for PKD Connect Conference (PKDCON) is open!
PKDCON brings together every part of the PKD community to provide education, research updates, resources, and networking opportunities. In-person and virtual options are available. Learn more and register today.
Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.
PKD Connect Ambassador
Masara is a junior undergraduate student at Arizona State University pursuing a bachelor of science in Pharmacology/Toxicology. She initially started out on the pre-pharmacy track, but came into the realization after 2 years of retail pharmacy experience at CVS that she would feel the most fulfilled and compelled if she was the first healthcare professional to hear a patient’s story-so that in return-she would be able to devise a patient centered plan reducing many discrepancies she encountered in her earlier career.
Now, she holds a position as an emergency room scribe in which she feels much ecstatic to experience medicine at its core. Her strive to better patient’s lives doesn’t stop here but is continued through her ongoing research project that tests a drug for its ability to increase reproductive longevity.
Her path to joining the PKD foundation was inspired by past encounters with troubled PKD patients that were in a clouded mental state. As an aspiring physician and perhaps a nephrologist, these short-lived snapshots quickly transitioned her into the climax of her future endeavors- function as a fruitful resource and mentor for kidney patients and her prospective patients. She and her parents, including two sisters, live in Arizona and love to enjoy the outdoors as much as possible
PKD Connect Ambassador
Risa Simon is a fierce patient advocate who is dedicated to empowering PKD patients at every turn. Whether she’s speaking, writing, mentoring or volunteering for the PKD Foundation, the National Kidney Foundation or the American Association of Kidney Patients, her inspirational message touches the hearts of both professional and patient audiences.
Of course, it wasn’t until she was diagnosed with the same disease that took her father in his early 40s, and put her brother on dialysis in his late 30’s, that she decided to join the PKD community as a life-long student. What she learned dramatically changed her trajectory.
Now celebrating nearly 13 years as a preemptive transplant recipient (from a living, unrelated kidney donor), she spends the majority of her time giving back by helping fellow kidney patients seek their best life possible. The life she now lives.
You may know Risa as a conference speaker, transplant industry consultant, PKD peer mentor, advocate, author and video producer—or, as the creator of the new mobile app “DONOR SEEKER.” For those who don’t know Risa, she looks forward to learning more about your PKD journey at a future Phoenix Chapter meeting or PKDConnect conference.
Page last updated December 2022